Today I had two spoons.

Yeah, I'm alive.

My desire to write has been diminished in the past few months due to summer, the job being busy, and moving. I may or may not start to write more soon but I felt the urge to tell you about my day today.

Today I had two spoons.

Living day to day with a serious, semi-invisible disease can be hard to describe. Even harder when you havetwo, albeit related. My main way to describe it to friends is through humor. I like to joke about the pain medicine for instance. But there are times, when I simply just can't describe what it is like to be me.

I have a reputation among my friends as someone who bails out at the last minute from get togethers to just hang out at home. It is pretty justified since I do bail out frequently, and I can tell it frustrates my friends at times. It has likely cost me some friendships and hurt numerous feelings, but I have never explained why I usually do it.

The absolute worst thing about having a disease is the pity. I would have to hire grad students from MIT to count the number of times someone has said, "Oh, you poor thing." The second worse thing is the disbelief. People can't understanding that a person can be fine one day, and not the next. I understand completely since I am the same way about things I don't understand, but it is still frustrating.

When I bail out of a gathering, 95% of the time it is because I simply physically can't do it. Trying to explain to my friends or family why I am staying home, I walk that line of pity and disbelief. Avoiding the pity of how I truly feel and dodging the disbelief of "he always does this".

In my current job, I meet a lot of people who are living with the same thing I am. One of them pointed me to the story of the spoons. It illustrates better than I can of the reason why I sometimes bail out.

Luckily for me, I am on a new medication that is helping immeasurably and giving me more relief. But even then, on some days I only wake up with two spoons.

So if I have bailed on you recently, in the past, or will in the future, I ask your forgiveness. I wish I could be there, but sometimes I just can't.